Category Archives: Special Needs

What About Me

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WhatAboutMe

I’ve been waiting for this day. Although I certainly haven’t been looking forward to it.

We got our first “What about me?” And it made me feel AWFUL!

Ever since we found out that Emmy has Williams syndrome, I was conscious of how it would impact Charlotte. In the beginning, Charlotte had no idea that there was anything different about Emmy. But, as time has gone by, we’ve had conversations about heart surgery and Williams syndrome and how things are more challenging for Emmy.

Charlotte clearly doesn’t notice any differences yet with Emmy. She’s just her sister. Period — end of story. But now she’s started to take notice of all the special treatment Emmy gets. The additional doctors’ visits, the therapy sessions at school; the meetings with therapists at home.

One wouldn’t think that she would be envious of doctors’ visits, but she is! Charlotte actually loves going to the doctor and dentist. (I’m sure Emmy would gladly trade places in that respect because all hell breaks loose when Emmy senses that she’s going to get poked and prodded by someone.)

And Charlotte is envious of the therapy sessions because they look like fun! Emmy is spending time with really nice therapists who play games with her and cheer her on. What’s not to like?

Well, all the special treatment has started to add up, and it came to a head yesterday when we had an Early Intervention meeting with Emmy’s team of therapists to discuss her goals. Charlotte was supposed to be at school, but it was cancelled. So she got to watch everyone fuss over Emmy some more…and it wasn’t fun for her. She wanted to be fussed over. And in her effort to get attention, she jumped on the couch and tried to get somebody — anybody — to focus on her. Of course, this resulted in a lot of wild bouncing around, and it was hard for me to try and hear what the therapists were saying. It was difficult to manage the situation, but I tried not to get frustrated with her. I know what she wants because I would’ve wanted the exact same thing when I was her age.

The thing is that I’ve been trying so hard to over-compensate for Emmy’s special attention. I wanted to head this off before it started. I didn’t want Charlotte to ever feel ignored. So my husband and I both take her for one-on-one time every weekend. We also signed her up for soccer, gymnastics, and swimming, and we try and make a big deal over all her various activities. My husband even coached the soccer team! I take her for mani/pedis. I read to her. I snuggle with her. I do arts and crafts with her — just the two of us! I try everything in my power to make her feel like she’s special too!

But yesterday when all the therapists left, her face fell, and she said, “What about me?”

She wanted to know, “Why doesn’t anyone get together to talk about me?”

And she’s right. All the outside activities that I do with her don’t compare to the fact that a bunch of people sit in a room and talk about Emmy for an hour. How can I possibly recreate that situation for Charlotte? I don’t know…

I told her that I talk about her and how awesome she’s doing with her teachers all the time, but that’s not the same…

The thing about Charlotte is that we don’t have to sit in a room and talk about how to get her to open a Ziploc bag, or climb the stairs, or keep her balance. She does all of those things beautifully. They’ve never been a struggle for her. Every single goal we set for Emmy yesterday are things that Charlotte has already met. And they all came easily to her. I don’t think I ever had to teach her how to use a fork and spoon. She just did it.

And I’m so conscious of the fact that she is very sharp. This morning, Charlotte was playing with her dolls, and I heard her doing math very quickly! She was saying, “What’s five plus three? Eight! What’s two plus seven? Nine!” I mean, she was QUICK. I was really impressed. And I told her so right away! She’s also really good at gymnastics — very strong and fearless. I watch every gymnastics’ practice. I take videos of her hanging on the uneven bars and send them around to family members. I celebrate her artistic talent and hang up her paintings.

But kudos from mom doesn’t compare to a bunch of people sitting in a room and reviewing her accomplishments for an hour.

So with all of my attention and praise, I don’t know how to recreate that aspect — that type of special treatment that doesn’t apply to typical children. The therapy sessions, the doctors’ visits, and the goal-based meetings. How does an arts and crafts session with mom compare to those things?

If anyone has suggestions, I am all ears! Maybe I can have relatives dress up as strangers and come over to discuss Charlotte’s progress. 😉 I’m picturing my mom with a funny hat on and a feathered mask over her eyes…yikes!

Or maybe the answer is just to keep stressing that things are harder for Emmy and, while these therapy sessions seem like special treatment, Emmy would rather not have to work harder than everyone else. That’s not an easy concept for a 4 year old to understand though. Especially because she notices how Emmy loves getting doted on by her therapists. It certainly doesn’t look like hard work to Charlotte!

I just want to do it right. Like every other mother out there, I have guilt up the wazoo — both for things that have and haven’t happened yet! (I love that I already have guilt for things that haven’t happened yet, by the way. So silly yet so true.) I want to get on the right path, but sometimes I don’t even know where to start.

Something to Watch this Weekend

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Screen Shot 2014-01-31 at 1.36.31 PM

Photo credit: http://www.missyoucandoit.com

If you have HBO On Demand, do yourself a favor and watch a documentary that will capture your attention and melt your heart. If you click on HBO and go to “Documentaries” then “Feature Films,” you’ll find a movie called Miss You Can Do It.

You can watch the trailer here: Miss You Can Do It Trailer

I’m not usually into movies about pageants, and when my husband and I sat down to watch it, I thought, “I hope this isn’t too pageant-y…or too depressing…” Usually, when we do video date night (because you know we’re not going out to the movies), I try and find something funny and light-hearted.

So, for this one, I took a chance. And, yes, I bawled my eyes out–but in a good way! I highly recommend it, for parents of typical children and those with special needs.

I wish that I had been more interested in special needs before I had a child with special needs. Does that sound strange? I feel like I was incredibly closed off from that world, and now I realize that I could’ve gotten involved a long time ago.

If my daughter didn’t have special needs, would I have watched that awesome pageant documentary?

Or this one? Monica and David

Or this one? Best Kept Secret

I can tell you the answer. I probably wouldn’t have watched any of them. I don’t think that makes me a bad person. I think we’re drawn to what we know. And I didn’t know ANYTHING about special needs until July 2011, when Emmy was born.

I know that Oprah loves this quote by Maya Angelou: “When you know better, you do better.”

In my case, I think that it would be: When you know more, you do more.

I’ve stretched my boundaries because I had to. But I’m so glad that I had to because I never would’ve seen what was on the other side.

Over the past few years, I’ve met a fair amount of people who have dedicated themselves to special needs work without having a child, or sister, or brother with special needs. They just did. For various reasons, or perhaps for no reason at all, they wanted to help. I am always touched by those stories. I think I’ve asked almost all of our Early Intervention therapists, “So how did you get into this?” Where did that all start? One therapist told me that, as a teenager, she was helping a friend of the family with her autistic child. I can’t tell you how much that impacted me because I thought back to what I was doing as a teenager and, while I was a good girl :), I wasn’t involved in anything meaningful on that level. I didn’t stretch much out of my comfort zone. One of my goals is to open my children up to a world beyond what they can see. There are many people out there, each with his/her own story to tell. It makes me feel good to finally open my eyes to all of those stories, not just my own.

Why I Stopped Apologizing for My Child

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Apologizing

A while back, I was looking to find a daycare that Emmy could attend a couple days a week. Before I started my journey as a mom, I assumed that my kids wouldn’t go to daycare because I had images of constantly-runny noses, unchanged diapers, and bored staff. Woah, was I wrong about that one! I’ve been able to find daycares that are run more like schools, so my kids are learning, having wonderful social interactions, and making cool art projects. They’ve also become very close with their teachers, and I love to see those special bonds forming. So I am pro-daycare, if you can find the right place.

This happened before I found the right place…

Emmy was too young to attend Charlotte’s daycare, which we’ve been very happy with, so I needed to find a place that would take younger children. And I needed to decide when I would drop the words “Williams syndrome.”

Here’s the thing. Not all parents reveal that their child has a diagnosis. They don’t want a label, they’re worried about their child getting into the school, the don’t want their child treated any differently, etc. I empathize with all of these concerns, and I’ve thought about the same things myself.

In my case, though, I knew I had to tell the school about Williams syndrome. First, I knew that our pediatrician would have to fill out a Universal Health Record before Emmy started school, and that it would say “congenital heart defect due to Williams syndrome.” So the cat would be out of the bag at some point. Second, I figured that the teachers would pick up on her delay and ask me about it. I didn’t want to have to fib my way out of that one. Third, my memory is not great. I would never have remembered who I told or who I didn’t. That’s part of the reason I don’t keep her diagnosis a secret from anyone. I would literally have to carry around a notebook and jot down who I told and who I didn’t — and hope that those people never run into each other!

Ok, so I knew I was going to tell. I just didn’t know when or how.

I called the first school and asked if they had room in their program for her age group. The Director said, “Yes. Come on over.”

I hopped in the car and mulled over how I would tell him about Emmy. When I arrived, he offered me a seat in front of his desk. All I could think was: Williams syndrome Williams syndrome Williams syndrome. He told me a little about the program. I nodded and smiled. Williams syndrome Williams syndrome Williams syndrome.

Finally, he stopped talking and asked me about Emmy. He wanted to know if she was either cruising or walking because that would determine her classroom. They had room in both. At this point, Emmy was barely cruising. She was holding onto furniture, but she wasn’t cruising with ease. I knew, though, that if I didn’t talk her up, he would put her in the infant class with the kids who weren’t walking at all. I didn’t think that holding her back, in that sense, was best for her development. She needed to learn from the kids who were already walking. She was also closer developmentally to her own age group than to an infant.

So I took a deep breath and confidently said, “Yes, she’s cruising. She’s been a little slower in that respect because she has Williams syndrome.”

Cat’s out of the bag!

I swear his eyes nearly popped out of his head.

“And what’s that?” he asked.

I told him about Williams syndrome and, in doing so, I realized that I was apologizing for my child. I was emphasizing that she was practically typical and that Williams syndrome was no big deal. Honestly, I felt gross. I was sugar-coating. I wasn’t being real, and I wasn’t being true to my child. When I saw the look of concern on his face, I just kept laying it on thick — how Williams syndrome would be no problem at all. I didn’t dare say that she might need help on the playground or with art projects. I didn’t mention how great it would be if her Early Intervention therapists could come and work with her. I acted as if she would be just fine with no help whatsoever. And then I sat back and waited for his response.

He looked incredibly uncomfortable. He didn’t embrace the situation. Instead, he probably heard nothing I said after the word syndrome. He nervously said, “Ok, let me go check back in with those numbers and make sure that we have room in the cruising class.”

He walked away and came back with a post-it note that had a number on it.

“Turns out we’re at our limit!” he proclaimed. “I thought we had room, but I was wrong. But I’ll certainly give you a call if anything opens up.”

I’m sure he was lying. On the phone, they had room. In person, after my revelation, they were suddenly booked.

I got back in the car, feeling sick, and drove to the next daycare. I debated not revealing her Williams syndrome this time, but I knew I had to for all the reasons I mentioned above.

This time, I toured the school first and then sat down with the Director who said they had one more slot. Great! She couldn’t back out on me now.

I then told her that Emmy has Williams syndrome and, to my horror, I fell back into that sickening apologetic tone. At one point I even said, “You wouldn’t even know there was anything wrong with her.”

UGH. OUCH. I couldn’t believe those words came out of my mouth.

The Director smiled sweetly and replied, “But there isn’t anything wrong with her.”

I felt awful. Here was a stranger who needed to tell me that there wasn’t anything wrong with my child. But talking to her made me feel like I was getting somewhere. I felt as though she understood and was ready to accept Emmy with open arms.

She then asked if Emmy had any medical issues. I said that she has a heart problem due to Williams syndrome but, here we go again, it’s no big deal.

Heart problem?? The air left the room. Her attitude of acceptance turned into a brick wall. This sounded like a liability.

“Welllll,” she started. “You know I’ll have to check with Human Resources about that.”

People have since told me that it’s illegal to not accept someone with a heart condition, but I haven’t done enough research to confirm that. All I know is that, when I called her later to see if she had checked with Human Resources, she said she was mistaken and that they actually didn’t have room for Emmy. The class was full.

So the woman who just told me that there was nothing wrong with my daughter was able to find something wrong. Thanks for the life lesson, lady.

I felt disgusted. I had basically sold my soul to explain away Williams syndrome, and both places rejected me. I felt as if I weren’t giving Emmy the credit she deserves. Instead of proudly embracing what was special about her, I was apologizing for her and explaining her differences away. And they didn’t take her anyway! All of my sugar-coating got me nowhere.

So I decided to speak honestly and openly about Williams syndrome. It is harder for her to do things. But, damn, does she try HARD at everything she does. She perseveres like no one else I’ve seen. And her sweet personality is just such a gift. I’m so proud of this girl.

Just as I resigned myself to not finding a place that would take her, there was a phone call from another school that we had been trying hard to get into. We had been on the waiting list for a while. They were packed but found a spot for Emmy a few days a week. The Director was so welcoming and, when I talked openly about Williams syndrome, I didn’t scare her away in the least. She said that she couldn’t wait to meet Emmy and that they were so happy to have her. I asked if we could have some of her Early Intervention therapists there to help her, and she responded, “Of course!” She didn’t freak out about Emmy’s heart or about her lack of walking. She wanted to put Emmy in with her age group, which I whole-heartedly agreed with. It felt good, finally, to be heard and understood.

Thinking back on my “apologies” for Emmy makes me feel icky to this day. Hey, this diagnosis isn’t her fault! She did absolutely nothing wrong. Through a completely random genetic event, she was made this way. And, boy, do I love everything about her.

So this whole experience, while stomach-churning in parts, gives me the confidence to say:

I am no longer apologizing for the special needs of my very special child. 

Love you, kiddo.

January

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January1

I’m having an interesting time with January so far. I’ve been going nonstop from Halloween through the end of 2013 — holidays, snow days, presents, clutter cleaning, cards, lights, tree, the ambition to do “holiday related” activities; the ball drop at midnight. It was a big rush to New Years.

The self care that I’ve written about before got pushed way to the back burner. I just put my head down and GOT THINGS DONE. Writing is very therapeutic for me, but even that  went straight to the bottom of the list. I actually felt guilty glancing over at my stack of books about writing. I’ve been working on a memoir about the past two years and, if it gets finished before 2045, it will be a miracle.

So, with all the craziness of October-December, I slid into January needing a complete recharge. It was hard for me to get back into writing right off the bat, but I cleaned out the clutter in the study, which is always a precursor to SOMETHING happening. And then I sat down with a few writer friends last week and, wow, did that feel good. It’s funny how some of us completely ignored our writing during the holidays, while others were actually productive. The productivity of others helped ignite that fire within me again. The words of encouragement from friends “You have to finish this book” also moved me forward.

But there’s something else stopping me too. When I write about the past two years, I want so badly to capture how I initially felt about Emmy’s diagnosis, how that feeling sat with me for a good six months and was only chipped away at little by little, and how that feeling is so far from what I feel today. As I move away from that feeling, it’s harder for me to go back where. Was I really devastated by this diagnosis? Really?? It’s hard for me to believe looking at the sweet, funny, good-natured, lovely daughter that Emmy is today. When we sit down at the breakfast table every morning, she gives the biggest, brightest smile and announces what she’s eating. I’ve never seen anyone that happy in the morning–ever! “Yogurt!” she declares, holding it up for me to see. Was I really upset for 6 months about Williams syndrome? Really?? It’s hard for me to even believe it myself.

In order to write about it accurately, I have to go back there in my mind. I somehow have to put aside the smiling cutie pie that I see in front of me and sink back into that mindset. Because even though I’ve moved on from that early time and changed my views on Williams syndrome by 180 degrees, I still feel like the story is inside of me. It’s just sitting there, waiting to come out. It’s been sitting there for 2 years now. I’ve changed, but the story is still heavy on my mind.

It’s the story of how I thought I would never smile again. It’s the story of how I bought every book I could find about having a child with special needs and read them through tears thinking, Is this really happening to me? It’s the story of how I thought my marriage was going to crumble because that’s just what happens, right? And it’s the story about how it was so hard to connect with Emmy for 6 months because I felt as if she were underwater. There was a barrier between my daughter and me and, during one Early Intervention meeting, I broke down sobbing and said, “I feel like she’s underwater. I feel like there’s a veil there, and I can’t break through. I don’t know how to connect with my own daughter.”

Those feelings have completely dissipated now, and the child that was once “underwater” now runs into my arms and says “Huggie!” But that story is still sitting there, and I remember it well.

The thing about writing memoir, though, is that it can hurt to go back there. If I were writing fiction, I don’t think I’d end up in tears just thinking about Chapter 2. And because I don’t want to feel that hurt again, it keeps me from sitting down and writing. Though if I don’t write, I still always think about writing, and that just drive me nuts…

I haven’t written fiction in a long time. I also haven’t read fiction in a long time (except for my friends’ pieces), though I’m starting to get back into it now. Memoir and personal essays really speak to me. A couple years ago, I wrote a very painful, true piece for a writing group. It was difficult to write but, boy, did it feel good to get it out. At the end of the night, we were all filing out into the parking lot, and this woman held me back to say that my piece really touched her because it was so raw and it brought her right back to things she’d experienced as well. That’s when I’m writing at my best–when I can go to that place and not sugarcoat. To me, the words don’t matter as much as the feeling behind it. I can always go back and change the words. But I can only revisit those feelings so many times before I can’t go there anymore. Or, in Emmy’s case, before I become too far removed from those early months and completely forget the pain that I was in.

Emmy will be 3 in July. Can I finish this memoir before then? Before I completely and utterly forget what it was like when my daughter was “underwater”? One of my writing friends suggested keeping a daily word count. That way I won’t get bogged down in revising Chapter 1 (as I’ve already done 100 times…). I just need to keep moving forward–get the story off my chest. Get it DOWN on paper. And, no matter where it goes from there, I will have gotten it out of me. For me, that is therapy.

The Best Line of Poetry…Ever

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TheBestLineofPoetry

We went to a Williams Syndrome Conference over the weekend, and we had a fantastic time. (Thank you to everyone who organized it and to all of the speakers!) It’s bizarre how, after 2 years of completely immersing myself in “all that is WS,” I still have so much more to learn. I’ve certainly come a long way from the confused mom who received a diagnosis that she’d never heard of before, but there’s still a long way to go. We haven’t even had our first IEP meeting with the school system yet, and I’ve heard those can be a doozy!

My favorite session at the Conference was a panel of 4 adults (1 man + 3 women) who have Williams syndrome. I was so moved by what they had to say and, also, by how much they’re accomplishing in their lives. In the beginning, I worried that having WS would be so limiting for Emmy, but there are adults who live completely independently, hold down paying jobs that they enjoy, and drive cars. I think there are a lot of misconceptions about WS and its “limitations,” and it was inspiring to hear these adults focus on their many abilities, not their disability.

And then I heard something that floored me — the best line of poetry EVER.

One of the women was talking about her best friend of 14 years, who is “typical.”

What I learned early on is that people in the special needs community (and educators, therapists, etc.) don’t use the word “normal” to describe someone who doesn’t have special needs. Because: (1) The opposite of normal is “abnormal,” and it’s cruel to call someone “abnormal.” (2) What is normal anyway??? I mean, really. Can we even define that word? I certainly don’t think I’m normal…

If you use the word “typical” instead of “normal,” I promise that you will impress all your friends. 🙂

So this woman, who I immediately adored, was talking about her typical friend. And she said: “She sees me as she sees herself.”

I swear that is the most amazing line of poetry I’ve ever heard: “She sees me as she sees herself.”

And it got me thinking: What if we were to see other people as we see ourselves?

The dad rooting for his son even though he’s on the other team…

The cashier who is taking her time even though you want to get home…

The person who is fishing for his MetroCard before getting in the subway turnstile even though he’s holding up the whole line…

The person with special needs who wants to talk to you…

What if we see others as we see ourselves?

What if we were to approach each day looking at strangers and thinking: You know, we’re a lot more alike than we are different…

I’ll give it a go. Why not?

And I’ll close by saying that I am so touched by people who truly befriend those with special needs. It’s easy to judge someone who is different. It’s much more genuine and beautiful and human to connect with that person and find the ways in which you are more alike, than different.

The Little Things

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TheLittleThings

When Emmy was first diagnosed with Williams syndrome, I talked to other moms who told me that I would appreciate the little things more. But I didn’t really know what that meant. First of all, at the time I was really upset about the diagnosis and didn’t want to appreciate the little things more. I just wanted Emmy to be miraculously cured. Second, I thought I had already been appreciating the little things with my first daughter, Charlotte, so I couldn’t imagine how I could appreciate them any more. And, finally, I didn’t know which little things they were talking about.

Until I experienced them for myself…

The first time my older daughter, Charlotte, put a toy phone to her ear, and said “Hello,” I thought, “Awww that’s cute.” I didn’t gasp in shock or run to get my camera. It’s expected that a typical child would put a phone to her ear. When a typical child plays pretend, the parent doesn’t go bonkers with excitement. It’s just expected.

Likewise, playing with a toy phone is not considered a milestone. Most parents of typical children could tell you exactly when their child took her first step or said her first word. But they probably couldn’t tell you the first time their child played pretend.

And there isn’t a spot for “first time playing pretend” in the baby book. First word, first day of kindergarten, first tooth, first haircut are all in the book with a blank line for date accomplished…nothing about “first time playing pretend.”

With typical kids, milestones like walking and talking are a big deal. But other smaller things seem to just happen. There’s not a ton of effort put forth by parents and therapists and doctors and other cheerleaders. Things just happen.

Many things with Emmy have been slow to arrive. It wasn’t like I blinked, and suddenly she was using crayons to draw on paper. We practiced a lot. Every time I see her take a crayon on her own and start drawing, I feel an overwhelming sense of joy. That one was a long time coming, and now it feels so good to see her scribbling away.

So in order to get Emmy to play pretend, we practiced. We put clothes on baby dolls. We cooked toy food in little pots and pans. We wheeled toy trains around a track and demonstrated how to say “Choo choo!”

We put toy phones to our ears and said, “Hello, Mommy. Hello, Daddy.”

And when Emmy spontaneously put a toy phone to her ear and said, “Hello,” I let it all sink in and appreciated every single second of that small gesture.

Right now, she imitates us a lot. But when she was younger, she would just watch intently. I used to push trains around the track, while her eyes were fixed on my every action. I would think, “Is she getting this?” And then, a few days or weeks or months later, she would totally impress me by imitating my exact motion and vocal expression. She was paying attention! She was drinking it all in and then showing off her skills in her own time.

I believe that she gets it long before she actually shows it.

And, as I’ve learned to follow Emmy’s pace, there have been many benefits:

1. I don’t make myself crazy with baby/toddler milestone books. I can’t tell you the last time I looked at one of those books, but I think Emmy was probably a few months old. Why fixate on a timeline that probably won’t apply to her and will just make me frustrated?

2. I burst with pride when she hits a big or small milestone. I don’t grumble, “Jeez that took forever.” Instead, I say, “AHHHHH!!! Look what she’s doing!!! Go Emmy!”

3. I really do appreciate the little things more. Here are a few things she did that knocked my socks off and caused me to savor every second:

-She “drove” a car at an amusement park without any prompting. The way she turned the wheel was just glorious. There’s a picture at the bottom of this blog entry: https://williamssyndromesmile.com/2013/09/04/when-you-really-really-really-need-a-vacation/

-She started finishing songs and doing the hand motions. I probably sang “Wheels on the Bus” 7,895 times without her joining in. And then, one day, I started to hear this little voice finish the lines with me. Music to my ears.

-This is a big one. In the past, when she’s been ready to take a nap, I asked “Nap?” and she responded, “Nap!” But lately, when I ask “Nap?” she responds, “Book!” because she knows that I always read her a book before putting her down for a nap. It seems like no big deal, right? If a typical child said, “Book,” it probably wouldn’t be cause for excitement. But it shows that she’s remembering what comes before and after. She gets it.

For me, appreciating the little things hasn’t revolved around the usual milestones. When she started walking, of course I was ecstatic. It was awesome to witness, and I loved cheering her on. But I’ve felt just as much excitement, if not more, over something much smaller — like the day she spontaneously picked up a toy phone and said, “Hello.”

Loud and Proud

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LoudandProud

The average person wouldn’t know that Emmy has Williams syndrome. First of all, it’s a rare (1 in 10,000) genetic condition that most people haven’t heard of. And, secondly, to the untrained eye, she outwardly looks and acts like any other child. If you’re not an expert on genetics, you probably would have a hard time picking a child with Williams syndrome out of a crowd.

This applies to many other syndromes as well. Since finding out that Emmy has a genetic condition, I’ve met other families who have revealed their own child’s diagnosis. And, just looking at them, I would have had no idea.

So I don’t have to tell anybody.

Nobody needs to know.

It can be a secret between me, my family, and the school system.

These ideas went through my head in the beginning, when we first found out. Especially because a doctor told me that I shouldn’t reveal her diagnosis until I knew someone really well. She told me that people can be confused and, later, cruel. I became terrified that other people would hate us; hate our family — just because we were different. I had an image of everyone gathered at a neighborhood picnic, and our family showing up. In my head, I saw the heads in the crowd turn to look at us and whisper among themselves that we were “that family.”

I saw it because I knew it.

When I was growing up, we had people in my town who were different. And everyone knew who they were. There was the guy who always walked around town because he couldn’t drive — because he has special needs. I always saw him at the park and the coffee shop. I was aware of the fact that he was different. And I wasn’t anywhere near as open-minded and curious as I am now.

When I was growing up, I casually noticed him, but I never spoke to him. I should have said “hello.” I should have been friendly and welcoming. I have learned SO MUCH about other people and their differences since finding out about my own daughter. That has been one of the many gifts she’s given me.

Recently, I drove around my old town, and I saw that very same guy walking down the street. I swear I cried at the wheel. All of a sudden, I became more aware of who he was. I became curious about his story. And I also reflected back on the kindness of others. I thought about the people who had talked to him at the coffee shop and shook his hand at the park. I now believe that there are more loving and caring people in this world than there are cruel people.

I believe that those who love will embrace our family enough to drown out that small faction of cruelty.

So I write this blog and share our story, loud and proud.

The response has been incredible. I don’t feel like “the others.” On the contrary. I’ve been so moved by the number of people who have accepted us — and appreciated us — just as we are. This is my family. This is reality. I can’t change who we are, and I don’t want to.

When I found out about Emmy’s diagnosis, I had some incredible phone conversations with other Williams syndrome moms, which I will never forget. I remember telling one of the moms that I was too scared to reveal Emmy’s syndrome — too afraid that the other moms on the playground would ostracize me.

She replied, “If that happens, you need to silently thank them. They’re showing you who they are — right off the bat, and you wouldn’t have wanted to be friends with them anyway.”

I take that with me. She’s absolutely right. I wouldn’t have wanted to be friends with those people anyway. And the people I have met as a result of sharing Emmy’s diagnosis? They’ve been amazing.

These Are The Shoes

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Shoes1

These are the shoes that I first picked out for my baby girl, Emmy. I was so excited to have another baby and couldn’t wait to put her sweet little toes into these cute shoes. I pictured her walking around the playground, climbing up the steps to the slide, with these precious flowered shoes on her feet. I bought these shoes and put them in her drawer, waiting to embrace the day she took her first steps.

Well, she never wore them. They are still brand new.

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THESE were her first shoes. I’m not joking. A far cry from cute, eh?

Our first Physical Therapist (who was wonderful) determined that Emmy has low muscle tone and needed a more supportive shoe. She asked me to find some shoes at a thrift store which she was going to cut up (gulp). I scoured a thrift shop, using her specific instructions, and presented her with the cutest pink shoes I could find that still met her criteria. I was hanging onto the notion that Emmy’s first shoes would be sweet and girly. That’s when our Physical Therapist grabbed a scissor and started hacking away. She cut off the fronts of the shoes and then sewed on black straps, which were intended to hold Emmy’s foot tightly in place. She then glued padding to the inside.

Emmy wore those shoes for about a month, and I grimaced every time I saw them. I longed for the first pair that I picked out that were still sitting in her drawer, brand new.

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These are the shoes that Emmy wore after the frightful pair. She needed more support on the side of her foot, so we graduated to these white shoes. They say “My Baptism” on the side. I think most children wear their baptism shoes only once, but Emmy wore hers for months, which made people chuckle.

I had a woman stop me in a store, point to Emmy’s shoes, and say, “Oh, I remember when we all had to wear those ugly first walkers!”

What she probably didn’t realize is that nobody wears ugly first walkers anymore. Most baby shoes are blinged out. She didn’t realize that I didn’t have a choice in the matter, and there were very cute shoes sitting at home in a drawer, brand new.

The next step was to move Emmy into orthotics, which are braces that go inside shoes to help stabilize the foot. When this idea was first brought up to me, I thought, “NO WAY.” I pictured unsightly braces up to her knee. In fact, one of our therapists has a brother who wore clunky metal orthotics when he was younger.

But it isn’t about me. It’s about what’s best for Emmy. So we got her fitted for orthotics, which are much prettier and smaller than I imagined. You can barely tell that she’s wearing them, and she’s very comfortable in them.

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These are the first shoes Emmy wore with her orthotics. She loved to pull open the velcro strap on the top.

And, in the end, she didn’t care what her shoes looked like. She just liked walking around; getting into everything. Through all of the shoe changes, she didn’t blink once. She just wanted to get up and go.

She has no idea that I still look at those first pair of shoes and feel a pang of regret, a pang that she didn’t get to experience her first years as typical children do. Or maybe it’s my own experience I’m thinking about–the regret that I didn’t get to put those cute shoes on my baby when I really, really, wanted to.

Sometimes things turn out differently than we planned. I’m a VERY (read: obsessively) good planner, so that’s been a challenge. But what hasn’t been a challenge is looking over at Emmy’s bright, smiling face and knowing that we’re doing what’s best for her. Right now, she doesn’t need cute shoes. She needs support.

The Word “Retarded” Hurts People

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TheWordRetardedHurtsPeople

I’ve been hearing the word “retarded” a lot lately.

“This is so retarded.”

“That person is retarded.”

Or (what people sometimes think is a more clinical, respectful term) “That person is mentally retarded.”

Why shouldn’t we use the word “retarded”?

I’m going to give the most basic explanation: It hurts people.

End of story.

The arguments:

1. What am I supposed to call people who look/act retarded?:

Nothing. Chances are that you’re referring to people as “retarded” not to offer a compliment, but to point out a deficiency. Think about why you’re telling someone about that person. What’s the point of the story? If it’s not a positive story, then why share it? If you do have a positive story to share, think of another description: “The woman over there with the curly brown hair was so helpful!”

2. Isn’t “mentally retarded” a well-known term in the medical community?

I’m not a doctor, but I will tell you that I’ve never met a doctor (and I’ve met many!!) who has used that term with me. It’s an out-dated term.

3. But it’s harmless to say “That’s retarded.” I’m not talking about a person. I’m talking about a thing/event/activity.

The word itself is hurtful. And if you use it, your kids will learn that it’s ok to use it too. And if our kids use it, the word will live on and on and on… Also, you never know who you’re talking to. You never know a stranger’s set of circumstances. If you use the word around a stranger without knowing his/her background (“This baseball game is retarded.”), you have no idea how that word will impact the person you’re talking to. What if the stranger’s brother was once called “retarded”? What if his niece was once called “retarded”? I guarantee that, most of the time, your words won’t come across as fun but as hurtful.

4. Hey, lady, haven’t you heard of Free Speech? No one tells me what to do.

I’m a BIG proponent of people not telling me what to do. I’m kind of rebellious in that way. If someone tells me to make a left, I’ll go right. If someone tells me to have a cheese sandwich, I’ll have PB&J. I really, really, really don’t like when people tell me what to do. BUT if I know that my action has the potential to hurt someone else, I won’t do it. I do believe in Free Speech, but I don’t believe in causing pain to others–even perfect strangers.

5. People are so sensitive. There are so many words that we’re not supposed to use anymore!

I can count on 1 hand the number of words that are not appropriate to use. It’s really not that many. If you stay away from about 5 words when talking to others, you’re golden. 🙂

Teresa B

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Teresa

Photo credit: The Bartlinski’s blog, Our Place Called Home

I can’t stop thinking about this little girl.

Teresa B just went in to the Operating Room at the Children’s Hospital of Pennsylvania for another heart surgery. She had surgery a few days ago but then went into cardiac arrest for 30 minutes. She’s been on ECMO, which is the same life support machine Emmy was on, ever since.

I’ve been following her story for the past week, when someone from our Williams syndrome community posted it on Facebook.

Teresa’s story is different from ours, but it brings me right back to that hospital room. It’s as if I’m sitting in front of the life support machine all over again, praying for Emmy to come back to us.

There are days when I practically forget that Emmy was on life support a few weeks ago. And there are days when I am right back there — watching the blood pump through the tubes coming out of her chest.

Here is Teresa’s story. Please pray for this sweet little girl as she undergoes surgery right now.

(This blog has music, so you may want to mute.)

http://ourplacecalledhome.blogspot.com